This agenda was last updated on 4/18/25 and is subject to change.
Friday, June 20, 2025
1:00 PM - 5:00 PM | Clinical Care Program: Part I [CME]
Topics include:
- Meningioma Treatment in NF2-related Schwannomatosis
- Hearing Preservation in NF2-related Schwannomatosis
- Variants of Uncertain Significance in NF1 and Schwannomatosis
- Dental Manifestations of NF1
- Challenges and Unmet Needs for Volumetric Analysis in NF1 plexiform neurofibromas
- The Use of Artificial Intelligence in NF1 and Schwannomatosis
- Case Presentation and Expert Panel: NF1 Optic Pathway Gliomas
- Case Presentation and Expert Panel: Schwannomatosis
The Clinical Care Program (CCP), offered in 2025 in conjunction with the NF Conference, is geared towards those healthcare providers actively seeing NF patients in their clinic and will focus on current best practices and standard of care through panel discussions, case studies and didactic presentations. The CCP is an expanded and evolved update to the Clinical Care Symposium, previously held annually prior to the NF Conference Opening Session.
Both parts of the Clinical Care Program are included with full NF Conference registration, but a stand-alone event ticket for just the Clinical Care Program is also available.
9:00 AM - 5:00 PM | Young Investigator Day
The Children’s Tumor Foundation is hosting the second Young Investigator Day (YI Day) on Friday, June 20, 2025, in conjunction with the 2025 NF Conference. YI Day welcomes early stage NF researchers, including trainees, pre-doctoral students and postdoctoral fellows. The application closed on March 1, 2025.
Saturday, June 21, 2025
8:00 AM - 12:00 PM | Clinical Care Program: Part II [CME]
Topics include:
- Meningioma Treatment in NF2-related Schwannomatosis
- Hearing Preservation in NF2-related Schwannomatosis
- Variants of Uncertain Significance in NF1 and Schwannomatosis
- Dental Manifestations of NF1
- Challenges and Unmet Needs for Volumetric Analysis in NF1 plexiform neurofibromas
- The Use of Artificial Intelligence in NF1 and Schwannomatosis
- Case Presentation and Expert Panel: NF1 Optic Pathway Gliomas
- Case Presentation and Expert Panel: Schwannomatosis
The Clinical Care Program (CCP), offered in 2025 in conjunction with the NF Conference, is geared towards those healthcare providers actively seeing NF patients in their clinic and will focus on current best practices and standard of care through panel discussions, case studies and didactic presentations. The CCP is an expanded and evolved update to the Clinical Care Symposium, previously held annually prior to the NF Conference Opening Session.
Both parts of the Clinical Care Program are included with full NF Conference registration, but a stand-alone event ticket for just the Clinical Care Program is also available.
12:00 PM - 1:00 PM | Special Session on Pain: Panel Discussion and Workshop
Moderator: Mark Hutchinson, PhD, Australian Pain Solutions Research Alliance
This unique session will address the critical intersections that shape the future of NF and SWN research, treatment, and care. Rather than simply acknowledging the complexity of the challenge, the panel will delve into proactive strategies and the practical steps necessary to foster transdisciplinary collaborations. Industry pioneers, clinical leaders, policymakers, and consumer advocates will come together to explore the convergence of life sciences, physical sciences, engineering, and beyond, emphasising that significant advancements in pain management and measurement rely on dismantling traditional silos and fostering innovative partnerships.
1:00 PM - 5:00 PM | Microenvironments and the Immune Response
Keynote Speaker: Nancy Ratner, PhD
Session Co-Chairs: Thomas DeRaedt, PhD, Andrea McClatchey, PhD
Invited Speaker: Michel Kalamarides MD, PhD
5:00 PM - 6:00 PM | Special Discussion: Regulatory landscape in rare diseases
Moderated by Julie K. Tibbets, Chair, Life Sciences Regulatory & Compliance, Goodwin Procter LLP
Speakers: Steffen Thirstrup, Chief Medical Officer, European Medicines Agency; Amy Comstock Rick, J.D., CDER’s Associate Director for Rare Disease Strategy & the Director of Strategic Coalitions, FDA’s Rare Disease Innovation Hub
6:30 PM - 8:30 PM Combined Saturday Evening Reception
A cocktail reception hosted by Children's Tumor Foundation at the Omni Shoreham, welcoming both NF Summit and NF Conference attendees.
Sunday, June 22, 2025
9:00 AM - 12:00 PM and 1:00 PM - 4:00 PM | Next Generation Treatments
Keynote Speaker: David A Gewirtz, PhD
Session Co-Chairs: Christopher L. Moertel, MD, Brigitte C. Widemann, MD, Angela C. Hirbe, MD, PhD
Invited Speakers:
Taylor Sundby, MD - ctDNAr early detection/diagnostics, therapeutic monitoring
Ali Bashashati PhD - Predicting diagnosis/response
Helen Morrison, PhD Targeted therapies beyond MEK
Rosie Kaplan, MD - Other strategies- targeting the stroma/immune cells
4:00 PM - 5:00 PM | Friedrich von Recklinghausen Award Presentation
Followed by Poster Competition Semi Finalists: Poster Advertisements
5:00 PM - 8:00PM | Combined Poster Sessions & Cocktail Reception
Basic / Preclinical Science and Clinical Science Poster Presentations. Refreshments will be served.
Monday, June 23, 2025
8:30 AM - 12:30 PM & 1:30 PM - 3:30 PM | Management of Diverse Clinical Manifestations [CME]
Keynote Speaker: William A. Gahl, MD, PhD
Session Co-Chairs: David A. Stevenson, MD, Tena Rosser, MD, Kaleb H. Yohay, MD
Overlapping phenotypes
Invited Speakers:
CMMRD: Katharina Wimmer, PhD
LZTR1: Alessandro De Luca, PhD
Intestinal NF1: Eric Legius, PhD
Hypertrophic neuropathy: Rhadika Dhamija, MBBSk
EBBR2: Michael Ronellenfitsch, MD, PhD
Musculoskeletal manifestations
Invited Speakers:
Muscle and carnitine: Aaron Schindeler, PhD
Pseudoarthrosis/MEKi: Jonathan Rios, PhD
3D volume and bone density: Noelle Larson, MD
Senescence and scoliosis: Florent Elefteriou, PhD
3:30 PM - 5:30 PM | Clinical Platform Session
3:30 PM - 5:30 PM | Basic and Preclinical Platform Session
5:30 PM - 6:30 PM | Special Panel: Future of healthcare and research funding
Refreshments will be served.
Tuesday, June 24, 2025
8:00 AM - 9:00 AM | Poster Competition Finalists: Platform Presentations
9:00 AM - 12:00 PM & 1:00 PM - 3:00 PM | Translational Models and Novel Research Approaches
Keynote Speaker: Pelin Candarlioglu Deacon, PhD
Session Co-Chairs: Sara Gosline, PhD, Lu Q. Le, MD, PhD, Eva Trevisson, MD, PhD
Invited Speakers: Luis Parada PhD, Alice Soragni PhD
3:00 PM - 3:30 PM | Closing and Adjournment
Optional Partner and Affiliate Meetings
REiNS Summer Meeting | Thursday June 19, 3:00 - 6:00 pm
Open to all patient advocates and clinician researchers
Topic: "Practical Endpoints”
Measuring more real-world impacts of NF in clinical trials and their long-term follow-up - things like employment, education, relationships, living independently, and more.
The NF Data Portal in Action: Analyzing Data & Accelerating Research | Saturday June 21, 8:00 - 11:00 AM
During a 90 minute interactive session, attendees will receive hands-on instruction from team members from Sage Bionetworks and Pluto Bio on how to request specific datasets and send data to analysis platforms linked to the data portal. Additionally, the Sage team will present case studies demonstrating how researchers can repurpose datasets. Pluto will demonstrate how data from the portal can be explored, analyzed and visualized in order to address your unique scientific hypotheses without needing to code. Following a break, selected investigators from the NF community will highlight how they've re-used data from the NF Data Portal in their research during a 60 minute lightning talk session.
Seats are limited, RSVP is required.
Plexiform Neurofibroma Volumetrics Workshop | Tuesday, June 24, 3:30-5:30 PM
This session will be an interactive workshop following up on the presentation of “Challenges and Unmet Needs for Volumetric Analysis in NF1 plexiform neurofibromas” from the Clinical Care Program on Saturday, June 21st.
In this two-hour workshop, we will be seeking consensus about the best way to move forward with developing a standard way to validate volumetric MRI measurement techniques in PN. The discussion will include the feasibility of developing a training and validation dataset of plexiform neurofibromas that could act as a “gold standard” against which volumetric MRI measurement systems would be compared for both future research and clinical care. All are welcome to attend.
